Neglecting myself as a caregiver led to lifelong consequences

A columnist's cautionary tale highlights the importance of caregiver self-care

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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Self-care doesn’t always take priority when you’re parenting someone with a neurogenic disorder like Angelman syndrome. But I’m walking proof that it should be.

As a caregiver to my 13-year-old daughter, Juliana, I’ve been writing about Angelman syndrome for over 10 years. My goal is to be intentional in telling positive stories about our journey. But it’s taken me five years to tell the story of my lack of self-care. It’s not because of shame that I don’t talk about this neglect — it’s because of my disappointment in myself.

Not a pretty story

Due to my neglected self-care early in our Angelman journey, I have a visible scar that’s a daily reminder of my misstep. The scar wasn’t always a scar. It started out as a very small pimple in the middle of my chest. No matter what I did, it wouldn’t go away.

Common sense says that when you have a pimple that can’t be removed, it’s not merely a pimple. But there was a lot of chaos in my life around that time. We were very new to Juliana’s diagnosis. I was also pregnant with my daughter Jessa. My husband had been laid off, and I was starting a new job.

A visibly pregnant woman stands outside holding her young daughter with her right arm. Her left hand is resting on her belly. It's night, and they appear to be in their backyard.

Sabrina, eight months pregnant, holds Juliana. The cyst on Sabrina’s chest was small but growing. (Courtesy of Sabrina L. Johnson)

These scenarios sound just as stressful as they were. When the spot wouldn’t go away, I started to get concerned about cancer and went to my dermatologist to get it checked. As it turned out, I had a benign cyst.

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Waiting too long

My doctor suggested injections after I had my youngest daughter. But after she was born, of course, life got even crazier. Since I knew the cyst was benign, I didn’t bother going back for the injections. After all, I was busy raising two daughters while also tackling reflux, trip training, and tantrums.

It seems that one day I simply woke up and the cyst was painful and large. What I hadn’t noticed was that my skin was forming a keloid, or overgrowing over the cyst. Of course, this didn’t happen overnight. But when you’re juggling a lot of balls, life moves quickly. The pain forced me to go back to the dermatologist and start the injections.

The cyst had grown into a huge ugly bump in the middle of my chest. By this time, I’d been exploring procedures to have it surgically removed. But my doctor delivered the bad news that cutting it might result in worse results for the keloid, which sat like a quarter-sized target on my chest.

Forgiving myself

On the way home, I remember sobbing in my car and repeatedly screaming to myself, “How could you be so stupid?” That day was a huge turning point for me. It took time for me to forgive myself and move on from the neglect.

It also took nearly a year of painful injections to get the scar to a manageable place. For the longest time, I was so embarrassed that I wouldn’t wear a top that didn’t cover the eyesore.

But that’s not me today. The scar on my chest isn’t pretty, but it no longer causes me pain. I’m still a little self-conscious about it, but I don’t run around in a turtleneck in the summer. That would be really bizarre.

The best we can do is learn from our mistakes and do better going forward. I don’t plan to neglect myself again. The next time could be worse.

When you’re a caregiver, it takes more effort to put yourself first. Doctor appointments, quiet time, and even donning supersoft pajamas are ways I take care of myself. In the midst of all the caregiving, I matter, too. Perhaps my body did me a favor and saved me from a fate that surely could’ve been more serious than an ugly scar.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.


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